Congress must help the MillionsMissing

We need Congress’ help to end the decades of government neglect of millions of disabled Americans with the serious neuro-immune disease Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome — a belittling name eschewed by patients and disease experts alike.

ME patients, like me, are already doing our part: On Sept. 27, in a social justice fight for our lives, we hold #MillionsMissing demonstrations in 12 U.S. cities (including Washington, D.C.) and 13 more abroad. Many will include a haunting display of empty shoes to stand in for the 1 to 2.5 million Americans, 17 million worldwide, debilitated by ME. We will stand up for those who are bedridden and homebound, missing from their schools, jobs, social lives and families.

{mosads}Other millions are also missing: Millions of dollars are missing from ME research and millions of health care providers are missing training on proper diagnose and treatment for ME.

Yet severely disabled patients crawling out of bed to demonstrate is not enough.

We need Congress’ help to right this social justice wrong. A bipartisan letter that 55 members of Congress sent to NIH Director Francis Collins on Sept. 9, calling for NIH-backed biomedical research into ME, is a good first step. But we need more.

Traditionally, Congress leaves it up to NIH to decide what diseases to fund and how much to fund them. However, this has not worked regarding ME — and the results have been devastating.

For the last 30 years in which HHS and NIH was left to make the decisions about ME, we have seen a striking lack of commitment to, and funding for, this group of Americans. ME patients and their families have been left unassisted and uncared for by their government, an inaction that translates to de facto neglect. The basic human rights and health care needs of citizens with ME have been disregarded.

Consider these sobering facts:

Decades of scant research funding has, of course, yielded minimal research results. That lack of research brings us to where we are today; no commonly accepted diagnostic tools or treatments for ME. Millions of ME patients are suffering with no hope of treatment or a cure. It’s no wonder too many consider suicide a reasonable option.

Prominent scientists say they are eager to study ME, yet they can’t get NIH to fund their work. Based on prevalence and disease burden, funding for ME should be an estimated $250 million a year. Instead it averages $5 million a year since 1995, far below other similar illnesses. For instance, ME got about $2 per patient in 2015, compared to $235 per patient for multiple sclerosis, another serious neuro-immune disease.

Finally, in October 2015, after the NAM and an additional NIH-appointed expert panel both agreed it is imperative to increase ME research funding, NIH Director Francis Collins promised help. A year later, his promise falls flat: ME continues to be significantly underfunded; ME patients continue to be abandoned.

The NIH is not alone in it’s failure to help. The CDC estimates ME-related medical expenses and lost productivity cost the U.S. $18 to $24 billion annually. Yet the CDC, through their website and medical education material, promotes treatments, such as exercise, known to cause patients to worsen and relapse. Even when presented with new (privately funded) research proving metabolic abnormalities in ME patients, the CDC refuses to stop disseminating information based on discredited research criteria and studies — including the PACE study, which appears to have manipulated data to propagate the misinformation that patients are sick for psychosomatic reasons.

Decades of government indifference have dug ME patients into a hole they are desperate to get out of. Correcting problems of this magnitude, on a timescale that helps currently living — yet at times barely alive — ME patients requires focused leadership from HHS, NIH and CDC. To get that we must have Congressional help, an exponential increase in resources and an expedited strategic plan. All this must be implemented with the urgency desperately sick patients deserve.

It is time for Congress to step in so that the current crisis in clinical care for ME patients — and the long history of neglect that brought it on — can come out of the shadows, come to light and then come to an end.

Rivka Solomon is a writer and ME advocate helping to organize the #MillionsMissing demonstrations. She is writing a book about her 27 years with ME, much of it spent homebound and bedridden. @RivkaTweets

The views expressed by authors are their own and not the views of The Hill.



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